Jenny
For the second of our series of ‘Your Behçet’s Stories’, we spoke with Jenny about her diagnosis and how it took many years to receive it, how online support has helped her, and much more! Thank you to Jenny for kindly offering to take part. If you’d like to be interviewed for the series as well, you’ll find all the details at the bottom of the page.
Jenny is 31 and lives in Devon with her partner James. She was diagnosed with Behçet’s in 2018 at the age of 28 but has experienced symptoms since she was 12. Jenny works part-time as an administrative assistant for a charity which provides residential care for young adults with disabilities.
When and how did you get diagnosed with Behçet’s?
I was formally diagnosed in 2018 by the Behçet’s Centre of Excellence in Birmingham after a referral from Bristol Eye Clinic. I had unknowingly been experiencing symptoms from Behçet’s since I was 12 years old. It all started with severe mouth ulcers, 8 – 10 at a time. They would bleed constantly and I would wake up in the morning with my mouth being glued shut. I struggled to eat and was in intense pain. I then started developing migraines, stomach pains and acne, all of which were put down to a teenage girl’s hormones.
At 19 I experienced my first bout of genital ulcers, which after numerous trips to the doctors were diagnosed as herpes. Lack of knowledge and understanding of Behçet’s leads to years, sometimes decades, of misdiagnosis for many people, not just me! When I was 26, after years of all of these symptoms re-occurring, I had my first experience of disturbed vision. I noticed a halo of blurred vision around my right eye. After going for a routine eye test I was told to head to hospital immediately and ask for an urgent ophthalmologist referral, and that’s where my journey to a correct and official diagnosis of Behçet’s began.
What did it feel like to receive the diagnosis after having symptoms for so many years?
The whole process of getting my formal diagnosis at the Birmingham Centre of Excellence took over 6 hours and was emotionally and physically draining. I had such a huge mix of emotions. I was relieved and excited to finally be able to put a name to what I had. I felt listened to after years of being dismissed, and like a huge weight was lifted from my shoulders knowing I wasn’t imagining my symptoms and that they were all linked.
I have to admit that I also had waves of huge disappointment and fear. After spending so many years not having answers I was overwhelmed with getting one. The frustration I felt also stemmed from the fact that I had approached doctors, years earlier, suggesting that I had Behçet’s after researching the condition myself, and was quickly dismissed. I found the treatment plan that was put in place was daunting. It included drugs with long, complicated names and scary side-effects, which I had to start immediately. It made it feel very real, very quickly. That coupled with knowing that I was living with a life-long incurable illness, the diagnosis was terrifying.
How would you describe what living with Behçet’s is like to someone who isn’t familiar with the condition?
Behçet’s is like living through a pandemic every day of your life. You’re never quite sure what you’re going to wake up to the next day. It’s lonely, isolating and you can feel like the whole world is moving on whilst you’re stuck in the same place that you were years before. It’s really hard, but it also shows you that you are tough, resilient and can cope with anything your life throws at you.
You have to live your life a little differently to others, by learning to listen to your body and adapting to how you feel on a daily basis. Just because you did something yesterday doesn’t mean you are able to do it today. I’m registered disabled due to my mobility and sight issues, but despite this, it is possible to live a full and wonderful life. It may be a little different to the one I imagined, but it’s still beautiful.
What have you found most difficult about having Behçet’s?
The long lasting results of flares are tough. One of my main symptoms is uveitis and the resulting damage from past flares has left me with permanent issues with my vision. In the last couple of months, I have been registered as partially sighted which I have struggled to come to terms with. Realising my vision was never going to recover or improve was a massive blow. But I have already started adapting little things in my life to make it easier, such as using visual aids like magnifiers to help me at work. I’ve also been referred through my GP to a local sight loss charity that will be able to introduce me to gadgets I can use around the house to make things easier.
I also suffer with very poor mobility, pain and fatigue due to my Behçet’s. I have a history of some quite spectacular falls, including falling down my stairs at home, breaking a rib and having to be rescued by the emergency services. So to make things safer for me I have had a stair lift fitted at home and I use walking aids to get around. At home and for short distances I walk with a stick or a walking frame, but for longer distances I use a wheelchair. It took me a long time to get used to having to rely on a wheelchair and walking aids before the age of 30. I was initially resentful and found it difficult to accept. But now I look at all the things I can do because of them and I see them as positive tools which help me get from A to B.
The future scares me. If I look back at how my health has changed in the past 5 years, I become anxious about where I’ll be in 5 years’ time. My partner and I would desperately like to start a family but the volatility of my health feels like a huge barrier.
How do you manage your symptoms day-to-day and/or flares, and do you have any tips for others?
The unpredictability of Behçet’s is hard to come to terms with. You’re never quite sure if you’re going to wake up to a good day or a bad day. Having coping strategies in place for those bad days is really important to me.
Self-care is vital when you’re in a flare. You have to take time out for yourself and not feel guilty for spending that time doing something you love or simply doing nothing. If my muscles and joints are particularly sore, I love to have a long hot bath with muscle relaxing bubble bath. I love to listen to talking books or podcasts. Podcasts are particularly great as there is something out there for everyone, they’re free, easy to listen to and can take your mind away for a few hours. I make sure I take all my medication, and I ask someone to fill my pill boxes up for a few days so it is all organised for me – it sounds silly but in the midst of a bad flare and brain fog it’s very easy to forget a pill accidentally. When I’m well enough I make sure I have a freezer full of tasty, home-cooked, healthy meals which I can take out and heat up in the microwave for the days when even cooking is a little too much.
What external support do you find the most helpful in managing your Behçet’s?
Creating a support network of people you can talk to when you need to is so important. I’m so lucky to be surrounded with an amazing support network at home and at work. My family and partner are incredible. I couldn’t ask for more from any of them. They always support me, lift me up when I’m struggling, hold my hand through appointments and remind me how strong I am. It’s the same with my friends. They have just adapted with me as I’ve tried to navigate through my illness and have always been there to push my wheelchair and keep me smiling. I could never ask for more or thank them enough.
I absolutely adore my job. I work for a charity called Lifeworks and I get a huge sense of pride and joy in being able to work, and working for somewhere that helps others allows me to feel as though I’m giving something back. My manager is the most compassionate and gentle person I’ve ever had the pleasure of meeting. The team I work with, the HR department and head office blow me away with their kind support. Nothing is ever too much trouble and any adjustment I’ve needed has been sorted within hours. During Covid I’ve been classed as a Clinically Extremely Vulnerable person and they’ve made sure I’ve stayed safe and allowed me to work from home since March. Having a job that I love, and feel supported and safe in, is so important to me.
There is also an amazing community online which is full of kind, helpful and wonderful people, all of whom are going through similar experiences to you. I run an Instagram page where I have been documenting my experiences with Behçet’s called @behcetsandme and through it I’ve made contact with people all around the UK and world-wide. It’s great because no matter what time of day it is, you can almost guarantee there will be a fellow spoonie awake somewhere in the world you can talk to.
Thank you so much to Jenny for answering our questions!
Interview published 18/12/2020
Could your story help others?
We would like to share your personal experiences of diagnosis and living with Behçet’s, and we’d like to hear from a wide variety of patients, of all ages and backgrounds. We’d also like to hear from carers and/or family members of those affected by the condition.
If you’re a patient you might have some particular tips for managing your condition day-to-day that you would like to share to help others, or you might simply like to tell us your story of diagnosis or about a recent fundraising event you’ve been involved in. If you’re a carer or family member of someone affected by Behçet’s, you might wish to share your personal experiences of caring for someone with a rare condition. You can share as much or as little as you want with us.
If you are interested in taking part and would like to know more please email Deborah at info@behcetsuk.org
We look forward to hearing from you!